Brain Injury Association of Massachusetts Blog

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Today’s blog post is part of a monthly feature called Mommy of A Miracle written by our mommy and caregiver blogger Kristin Olliney, the mother of seven-year-old Isabella, who suffered brain damage from sudden acute encephalitis at just four-and-a-half. In today’s post, Kristin shares the how she handles the many emotions involved in being a caregiver and mother of a child with a brain injury. Read Isabella’s entire story on our website.

As a parent to a child with a brain injury, I have my moments on the emotional roller coaster from hell. That rush of many emotions all at once usually creeps up on me when I least expect. I am still working on allowing myself to have these moments. I am starting to realize that it doesn’t make me weak – instead, it makes me human.

A couple weeks ago when Isabella was at Aquatics “swimming” therapy, I noticed that the radio was on in the background. The song on the radio was Anna Nalick’s “Breathe,” which was Isabella’s favorite song before her Acquired Brain Injury (ABI). As I watched Isabella swimming and I listened to the song, the tears started rolling down my face. The flood of emotions overwhelmed me. In that moment I was sad, angry, worried, nervous, happy, proud, amazed and finally, overwhelmed with joy.

I have learned that it is OK to be sad and angry. Anger is a very foreign feeling for me and that emotion is usually coupled with sadness. The truth is that at times I am very angry and sad because Isabella was robbed of the life she should have had. As I listened to the song, I flashed back to the four-and-a-half year old little girl who would sing “Breathe” at the top of her lungs. Then, Isabella knew all the words and she didn’t have a care in the world. That happy-go-lucky little girl is forever gone. Isabella didn’t deserve this. I have never been one to dwell on the life that Isabella lost. However, I am learning that I am human and it’s OK to feel anger and sadness as long as it’s not what I focus on. I choose to focus on the life that Isabella has and I watch her in amazement at what she continues to overcome.

As the song continued, the emotions turned from sadness and anger to worried and nervous. On the outside, Isabella looks like every other seven-year-old little girl. I have witnessed firsthand how cruel the world can be to those who have invisible disabilities. I worry about Isabella’s future and wonder, will she be able to be the “pet doctor” she wants to be? Will Isabella be able to have her two sons and one daughter someday? Will she be happy? Will Isabella be a self-sufficient adult one day? I allow myself the moment because I think it is only natural to feel this way at times. I can’t predict the future and I am not sure I would want to. I have learned that the only thing that comes from worrying is that it ruins the moment. Worrying doesn’t change anything. All I can focus on is today. I know I am doing everything I can today to ensure that Isabella has the best future possible. I have to have faith that in the end it will all work out. After all, Isabella was saved for a reason.

As I am lost in the song and all the emotions that follow, I hear Isabella laughing in the pool. My emotions immediately turn to happy, proud and amazed. The song continues, I take a deep breath and the tears become filled with joy. Isabella yells “Look Mommy, I’m doing it all by myself” as she swims for the first time. I see confidence appear on her face, something that was taken two-and-a-half years ago. Isabella is amazing. She inspires me every day. I have never seen so much fight in anyone. I stood there watching her swim with a huge grin on my face (tears and all) because I am so very proud of her. I choose to focus on all that Isabella has overcome and the miracle that I have been blessed with.

As the song ends, the emotional roller coaster stops. I am still working on being OK with all of these emotions. I am choosing to live one day at a time and one moment at a time. I am learning that these emotions are part of the journey and help me move forward. At the end of the day, I am the luckiest Mommy. I got to leave the hospital with my baby two-and-a-half years ago when no one expected her to make it through the night. There are so many parents of children with a brain injury who don’t get that chance to take their baby home. I don’t take it for granted for a second that I did.

Care giving is no small feat. Caregivers are giving, loving, patient people who often put others’ needs before their own. Many of the skills needed for care giving are learned over time through trial and error. We asked our knowledgeable and supportive Facebook fans made up of survivors, caregivers and family members what advice they’d give to new caregivers as they deal with so many of these issues every single day.

Here are the top 10 tips for brain injury caregivers, with a little extra advice added in:

1. Be glad your loved one is still with you. – Donna

2. Be patient. – The Betty Clooney Center – Traumatic Brain Injury

3. Patience, persistence and determination! – LaRissa

4. Be honest about your limitations and cultivate a good sense of humor – it really helps! – Clare

5. Stop hovering. We can pick up on your anxiety which feeds ours. -Pamela

6. One hour, one day, sometimes only a minute at a time if that is all you can do. – Lori

9. Take time out to make sure you take care of yourself so you can be the best caregiver you can be.

10. Build a support system and find people you can rely on when you need to.

Interested in joining the conversation? ‘Like’ us on Facebook and Follow us on Twitter. Check out more care giving posts here, here and here. Still looking for more information? Call the Brain Injury Association of Massachusetts Information & Resources Department at 1-800-242-0030.

Our Facebook page is a place for conversation, information and of course, support. We love when everyone gets involved in the conversation and shares advice. Last week, we asked our Facebook fans to share their best advice that they would give to a caregiver or loved one of an individual with a brain injury and we got a lot of great responses. The best caregiver tips and advice we get are from those who have experience providing care to brain injury survivors and survivors themselves! Check out 10 tips for caregivers that our wonderful Facebook fans shared with us in their comments:

1. “Err on the side of caution after a concussion when considering return to school and return to play timelines.”

2. “Be patient with me please, and learn who I am while I relearn who you are.”

3. “Take it one day at a time.”

4. “Recognize that being better today does not mean being better tomorrow. Gains are not necessarily permanent. And even when someone does seem to be improving, don’t act as [if] everything is ‘all better’ because that can make the patient feel terrible when they need more help.”

5. “Don’t say ‘I do that all the time’ in reference to forgetting stuff. It’s not the same! It doesn’t make us feel better; just makes it worse.

6. “Don’t keep asking ‘Do you remember…?’ People would ask me that all the time in the first few years after my accident, and it truly made me feel stupid when I didn’t remember.”

7. “Provide patience, quiet time, understanding and love. The brain takes time to heal and cannot be rushed. Walk away if you feel upset or feel like yelling. Noise, like yelling, only causes the brain to shut down and the mind to go blank. We know we aren’t the same and are bewildered by this stranger who takes over and for that we are scared and sorry. Give us time and we will start coming back to you. Sometimes we come back better! It is a long and winding road for all.”

8. “Be sure to include the family when setting goals/creating a care plan.”

When you’re a caregiver, finding time to take care of your own physical needs is difficult enough, but taking care of the physical needs of someone else is even more challenging. Assisting someone else to dress, bathe, sit or stand when they are upset, agitated or combative—often the case when caring for someone with a brain disorder such as Alzheimer’s disease—requires special strategies. The following five techniques can make taking care of a loved one’s physical needs easier.

Approach from the front and retain eye contact. When assisting someone physically, do not approach him/her from behind or from the side. This can startle and confuse the person in your care, leading to increased levels of agitation and/or paranoia. Instead, approach from the front. Touch the care recipient on the shoulder, upper arm or hand, and tell them what’s going on. Use a calm voice to walk him/her through the whole process. For example, “Okay, let’s stand up. Good. Next, we are going to… .” Retain eye contact throughout the duration of the activity.

Elicit your loved one’s help. Even when frail, your loved one might be able to shift his/her weight or move his/her arms or legs to make physically assisting them easier. Some examples are: “We’re getting ready to stand now, mom, so lean forward as far as you can,” or, “Can you move your leg, honey, so I can change the sheet?” A little help from them means a lot less work for you.

Allow the person to finish what they’re doing. If, as a caregiver, you are running late, the tendency is to hurry your loved one, too. However, this rushed atmosphere is very difficult for care recipients, especially those who suffer from memory loss or brain impairment. Though you may try to sound calm and encouraging, it’s easy for loved ones to pick up our “anxious vibes.” So, even if running late, allow some time to finish the current activity before moving onto the next. For example, “Mom, after you finish that last bite of cereal, we’re going to get you dressed and ready to see your friends.”

Utilize the major bone and muscle groups. When physically assisting a loved one, pulling or supporting them by their hands or arms is not only difficult, but may lead to injury for you and them. Instead, utilize the major muscle/bone groups.

For example, when taking someone for a walk, stand directly behind and to the left of him or her. Place your left hand on their left shoulder, and your right hand on their right shoulder. In this way you are walking with your loved one in a comforting hug rather than pulling or pushing them. And when turning someone in a bed, utilize the large bones in the hip and shoulder, and the large muscles in the legs. Pull them toward you with your right hand over their hip or at the knee, and your left hand at their shoulder. Finally, when pulling someone to a standing position, it’s best to use a transfer belt (one can be purchased at any medical supply store for around twenty dollars).

Once they are sitting at the edge of the bed or chair, pull up on the transfer belt, “hugging” your loved one close, again, utilizing their large muscle groups in the shoulders and the back. Remember to keep your back straight and to always change position by moving your feet, rather than twisting at the waist. And before going home from your next doctor’s appointment, ask for a referral to an occupational therapist who can help you develop your transferring skills.

Allow for Their Reality. Remember to accept your loved one’s reality, even when assisting with a physical task. If, for example, your spouse becomes shy because he/she thinks that you are a sibling and doesn’t want to get undressed in front of you, don’t force the situation. Try leaving the room and coming back in a couple of minutes. Perhaps on a second or third attempt your spouse will recognize you and be amenable to your care. If all else fails, consider the situation. Is it an emergency? Changing a loved one’s soiled garments cannot be delayed. However, if a care recipient is being difficult and doesn’t want to take a bath or wash his/her hair on a particular day, that’s okay. Plan on doing it at a later time that day or the next day, when your loved one may accept your help.

Finally, don’t try to physically assist with caregiving unless you can. Injuring yourself will not help the situation, and will often make your caregiving responsibilities that much more difficult. If you find yourself in a nonemergency situation where you are unable to physically assist your loved one (for example, after he/she slides from their chair to the floor) call your local fire department and request a “fireman’s assist.” They will come to your house and help you. If it is an emergency situation (where either you or your loved one are injured), contact the paramedics by calling 911.

For additional information, contact FCA at (800) 445-8106.

Used with permission of Family Caregiver Alliance, National Center on Caregiving. For more information, visit www.caregiver.org or call (800) 445-8106.